Mayo Memories: Before (Part1)

When I see or hear Mayo, I don't think about the month of May, mayonnaise or Cinco de Mayo festivities. I flash back to three years ago and my visit to the Mayo Clinic in Rochester, Minnesota. 

Starting with a head cold in May 2017, I hadn't felt like myself and had only gotten worse as we tried different treatments, tests, and doctors in the Salt Lake City area. A trip to the Mayo Clinic a year later wasn't the goal or the end of this chapter in my life, but definitely one of the turning points in the process. For that reason, when my Mayo anniversary roles around, it brings up loads of memories, emotions, and gratitude.

May 1st, 2018, we flew to Minneapolis and checked into one of the clinic hotels. The plan was to meet with specialists and squeeze in as many tests as necessary to make sense of the last year of symptoms and exhaustion. I was nervous for what the Mayo doctors might find, but hopeful for all the "catastrophic issues" we might rule out. We planned to fly home after a week but had no idea what to expect and were fortunate to have friends in the area and affiliated with the Clinic to ease the anxiety. 

Since even the short version will take some telling, this is Before the Mayo. During and After will follow.

I pushed through the issues and nudges all summer, hoping it was temporary and related to stress and over-training. Very low energy, headaches, allergy symptoms, vasovagal episodes, and a feeling in my gut/heart/head that something was not right. As a lifelong athlete and body sensitive, I knew pushing through wasn't cutting it but acknowledging it was something serious was scary and full of unknowns.

By September, I was exhausted and could barely make it out of bed, let alone 8 hours of work, and other activities. Under doctor supervision; I had tried allergy medication, different exercise techniques with food and hydration, weeks on and off the bike, stress and lactate tests, and more. We did bloodwork (thyroid, virus, adrenals), ultrasounds, MRIs, CT scans, specialist exams, and the list goes on. There were possible diagnosis, including Carotodynia, Eagle syndrome, Marfan syndrome, and PFO (patent foramen ovale). Most were ruled out within two weeks with further testing or dropped when the typical treatment didn't help. I was riding an emotional rollercoaster while my energy levels continued to dip. I finally left my job to focus 100% on my health.

In October, despite being vegan for 10 years, a heart doctor determined my stress test and echocardiogram results were suspect and I had an angiogram. My arteries were "the cleanest they'd ever seen" and I was sent home to recover with no further answers other than ruling that out. Thankfully, I was referred to a homeopath and we started focusing on EBV (Epstein-Barr Virus) and CMV (Cytomegalovirus). I also started seeing a jaw specialist, began acupuncture treatment, and continued to see other doctors or at least get on their schedule.

There was a time, we thought we figured it out. It must be Diabetes Insipidus (DI) due to the frequent peeing and other symptoms, but the nose spray treatments didn't make a difference and actually did more damage. I did learn a lot about my urine during those couple months.

I could still ride my bike but had to keep it under 15mph and focus on the helmet in front of me to keep from getting too dizzy. Same for skiing, focus on the coat in front of me and reduce my speed. Pilates was also tricky and had to be modified so I didn't have issues with balance and feeling off. Hiking became my thing and continues to be my go-to when I'm feeling wiped out. I started working again part-time in March once the homeopath and other treatments brought some consistency and energy back to my days. I could recognize good and bad days pretty quickly by then.

Looking through my photos, I was in denial. I hardly took a photo from the doctor visits, procedures, or bed. My photos show outings with family and friends that helped me get through the tough times. I did pick up journaling and have pages and pages where I was able to start addressing the unknown and what was happening. This mirror selfie from late December sums it up pretty well. The black eye from a skiing fall when I lost my balance.

After a year with slow progress and continued setbacks, we reached out to our Mayo connection and were able to get approval for a May 2018 visit. Rather than sit on waiting lists and take one diagnosis at a time, it was time to test for everything, especially the scary long-term diseases. 

Mayo Memories: During (Part2) to follow